My mum and I have been researching our family history, during the course of which we discovered that my mum has a half brother she didn’t know existed. Two of his daughters have both died in the last 10 years one from ovarian cancer and one from breast cancer. We only found out about this very recently after starting to go through my gran’s papers after she died.
Up until now I have always told doctors that we didn’t have cancer in the family but now I wonder whether I should mention this. I don’t have children to pass the faulty gene onto but I have a younger sister who has 3 girls so obviously there are some concerns about whether we should have testing done.
I just don’t know what to make of it all to be honest. Should I mention this to my onc when I see her next???
I should mention it to your Onc when you next see her, just in case.
My parents are both only children, so I’ve never had any aunts, uncles or cousins, but my Mum’s cousin died of bc about 30yrs ago, at the age of 46. When I was first diagnosed, my onc wasn’t concerned about me having a family history, as he said it wasn’t a close enough relative to me.
Because our family is so small, I’m hopeless at working out how people are related to each other within a family, but I wanted to tell you about my Mum’s cousin, hopefully as reassurance to you that there won’t be any concern for you either, as regards a family history.
I think you should mention it to your Onc if you have an appt coming up; or make an appt with your GP as they can also refer you and can talk to you about any family history. We also have type 2 diabetes (I’ve inherited that as well!!!)on my dad’s side.
I wasn’t concerned over the cancer in my family as both my parent are 1 of 7; but I was still referred due to age of my cousin who died of BC at 42 and a few other members (1 died) the others didn’t who had either BC or Bowel cancer, until my Onc’s registrar suggested it.
Anyway I agreed; but it was my GP who referred me & sent the questionairre I needed to complete.
I now have an appt with the genetics clinic on 26 July to discuss their findings.
It can be quite worrying ( my mum is worried as it is on her side of the family but she is coming to the appt with me).
they usually offer testing based on a points system called the the evans score… this looks at the age and type of cancers… if mum hasnt been affected then it does reduce the risk that the cancer is genetic but if your cousins were young at the time of diagnosis then it is possible you could get genetic testing… you certainly fit the criteria to be tested through the brca 3 research trial called the genetics of familial breast cancer study which will test for the main genetic changes in brca 1 and 2 if there are 3 breast or ovarian cancers in the family.
Lxx
Hi all,
I would mention it too and push for testing if you can.
I saw genetics in Nov 2010 after mum, younger sister, mum’s cousin all having had BC during the last 6 months. I was told my risk was high (I knew that already) but there weren’t enough instances in my family to be tested for the BRCA genes - I was flabbergasted and disappointed and felt it a complete waste of time.
When I was diagnosed in March, my surgeon was disgusted that I hadn’t been tested as I could’ve opted for double mx if he’d had the results to hand and should I have wished this.
A strong letter from my BC team (following receipt of a second letter from genetics stating my risk of getting BC was still high after their investigations - I’d just had my initial mx) and I now have another appt at the end of Sept, still not sure if I will get tested this time or not, or yet another big waste of my time…
beverlie a lot depends on the age of onset… what age were you, sis and mum at diagnosis… and was mums affected cousin related to her through unaffected females? did any of them have cancer in both breasts? and are there any ovarian cancers in the family?
i could give you a rough idea whether you would fit the criteria for testing.
Thanks Lulu,
My mum was 50 with first episode, and 67 with latest last year, my sister was 36 and mum’s cousin was 57 - mum’s cousin is related through my grandad who died from bowel cancer - this has subsequently been investigated (June 2011) and not related. I’m 41.
Only my mum has had BC in both breasts on the two separate occasions - no ovarian cancer, just cervical.
I’m not sure what they will do at my next appointment - hopefully not just discuss my family tree history again.
sorry for taking such a while to reply… i have been away my holidays and just trying to catch up now…
between you, mum and sis you have a score of 20 and they usually require 20 or above to be tested so i dont see any reason why they wont test either you or your sis.
some people dont want to know if they have a gene mutation but some people are very keen to be aware if they are and even to have preventative surgery.
of those who fit the criteria for testing 80% come back negative so still have a higher chance of it not being a gene fault… that would still mean daughters and other sisters would be eligible for early screening.